Waiting for my plane to begin to taxi, crammed in my seat looking for what used to be a fold down table and is now the size of a small napkin, I’m thinking that some trips are wonderful, and some are not. Some bring you to warm and exciting vacations, and some are to discuss bad news in person, eye to eye, hand in hand. My 87 year-old father, who still practices law and writes profoundly better than me, is faced with an awful roll of the dice- a diagnosis that splits between a potential treatable condition, or ALS. 4 months treatment will tell. There’s nothing like a harsh reality to make things clear, to blaze a spotlight on what’s important and what the questions are. In our family meeting to discuss my dad’s prognosis, the words tumbled out of my mouth before I could retract them, but maybe that was not just me speaking- “If this diagnosis goes south, it may come down to the question what do you want- as long as possible or as good as possible. I don’t think both is an option.”
Now upon reflection I see that may be one of the central questions of our industry.
Supportive living settings, particularly those for elders, very often are working with people’s “last chapter” of life. There really is very little anyone can do about when the chapter ends. Most of what we help effect is the character and quality of this last chapter, or how it ends. We rarely talk directly about this, our culture rarely talks about death at all, but if someone asked many of us to summarize what you do in one sentence it may be- “I help make people’s end better.” End in the broadest sense of the word. That is indeed a profoundly noble, spiritual calling.
I have seen firsthand scores of caregivers who embody this calling intuitively, with profound grace and love. I have witnessed this love when I have over-nighted at a supportive setting to learn how to design them better and seen tireless work with such humility, and I was grateful for this love when I sat by my mothers hospital bedside, held her hand and watched her die. Indeed, our industry is full of people who care deeply and bring this spirit to the “how” of the end.
And yet I am confounded and saddened by a nagging question, one that I find myself struggling with many times after visiting a setting- why are our nursing homes full of so many residents that appear to have had the quality, the character of their last chapter drained away from their soul? Alive but not living. The walking dead. An emphasis on living “as long as possible.”
My current experience with my father’s illness at his advanced age has better revealed a paradigm that could be at the root of this- The clinical medical community views death as failure. What a setup. Eventually you fail with everyone!
Now, I do want to be clear. I am not speaking about sudden death or disease of someone taken too young; that’s a different kind of circumstance, a different kind of mourning, a different kind of pain. I am, however, speaking about death of an elder that has lived a long and full life. I am not suggesting courses of action that actively reduce a life’s trajectory, rather considering the pros and cons of more intensive measures that may prolong an already long life, but render the end very unhappy for everyone.
Here’s one of the challenges for us in the supportive living field: Our medical system is driven by, directed by, ordered by, overseen by, funded by, and governed by doctors and pharmacists who are brilliant life savers but are also products of a system that does not acknowledge death, and have literally sworn allegiance to the eventually futile fight against it. Quality of life is really not part of the conversation, thus the only option appears to be “as long as possible.” And once an order is given by a doctor, it of course must be followed. Particularly if one finds themselves in a Medicaid or Medicare skilled nursing setting, the safeguards and regulations that are intended to police fraud and malpractice unfortunately straightjacket the caregiving staff and even family members from having the freedom to consider “as good as possible” over “as long as possible.
An emphasis on as long as possible is not all doctors and western medicine’s fault, although it is the primary mechanism of delivery. Really it begins perhaps with our western culture that does not deal well with the notion that death is part of life, and even that there can be some sweetness along with loss. Poet Arthur Shopenhauer noted “Mostly it is loss which teaches us about the worth of things.” Life is indeed sacred, but is there a point where the quality of life extended by extreme measures, therapies and/or pharmaceuticals wanes? It brings me back to the question in my first blog “what makes life worth living,” a personal question with as many answers as people on earth.
Adding to the dilemma is that life expectancy has grown so tremendously over the last few decades. The notion of forgoing any life extending treatment and choosing a shorter but more quality-filled end for a 65 year old is perhaps much more unthinkable than considering the same decision for a 95 year old.
Moreover, death itself is not good nor bad. In nature often death of one brings life (food) to another. It is our MIND that brings the valuation to it.
All this sounds like a lot to mull over, a rather complex issue, and of course it is. A simple answer or path to improvement is not easy to find, and so personal. My hope is that allowing ourselves to talk about it is a good start on a long journey.
“Death is not the greatest loss in life. The greatest loss is what dies inside us while we live.”